26 August, 2011

At one point, another person diagnosed with autism asked me why I would refer to myself as "bad brains" and if this was a joke. It's not a joke at all. The most obvious explanation I can think of for calling myself bad brains is that I'm committed to being as negative about disability as I care to be. I don't necessarily feel like people who talk about their disabilities positively are just characterizing themselves that way for political reasons, but that's not the way that I'm made. Maybe it's even part of my disability that nearly everything is the end of the world, and at the same time nothing is. It would be completely out of character for me to talk positively or even neutrally about being disabled, and I don't think I should have to do that to have my opinions about anti-ableism respected.

But this motivation--reclaiming negativity about disability--actually isn't even the major appeal of a bad brains identity. One of the big things I love about the phrase bad brains is that it can be used to indicate a lot of different things, and one of those things is a flaring up. It can be really hard to get respect from other people, or even feel that you deserve respect, if you don't have a disability that looks the same every day. When you are suddenly slow (or suddenly sad, and that makes you slow), or suddenly so angry that you can't tolerate doing anything slightly difficult or stressful, there isn't really anything to call this to try to explain why you're making what seem like very silly and strange decisions in an attempt to look after yourself, or why you can't do the things you can usually do. So I like to call it bad brains, as in, "I'm having bad brains today," or, "My brains are too bad to do that right now" or, "Sorry but my brains are about to go bad."

This isn't necessarily something that everyone understands, but some people pick up on it, some people in my life have learned what it means and, most importantly, it helps me explain and justify things to myself. It used to be completely unbearable because it felt unexplainable and overwhelming when things just went different for me and became much harder or more painful. I felt lazy and weak. At least now I can think of it as kind of like having a cold.

In addition to being really catchy and practical, bad brains is my identity of choice because it is so vague. I kind of hesitate to say this because I don't want to sound like I have some problem with having autism or that I don't identify with the Autistic community--obviously at any point when people with autism are being counted I will be specific and say that's what I am--but on a practical level and I guess a loyalty level, I don't really feel that AUTISM AUTISM AUTISM is the way to describe me or anyone. I'm just feebleminded, bad in the brain, slower than molasses going backwards, batshit, a lid-flipper, too stupid to live, NOS, awesome fuck-you surprise. Walking corpse. Magikarp refuses to evolve.

Autism is a big word, and I think if I attempted to say that what I experience is the definition of autism, that wouldn't be any more acceptable than people saying autism is a social disability. A lot of the people I feel really close to were diagnosed with autism--at the same time so were some people I couldn't feel less close to--so maybe let's just say that autism is a big word that describes what some disabled people look and act like, more or less, especially when they're young. I know this seems like a really aggressive rejection of the label, but I feel so extremely not represented by what professionals say about autism, while also being similar enough to a lot of other people who were diagnosed with autism that I don't think the classification is meaningless.

When I meet Autistic people who resemble the Asperger's stereotype (this is mostly visible in how they converse), I feel a certain sense of attachment and relief. But it's not any more than I would feel if I met someone with an intellectual or psychiatric disability, or even if I met someone who wasn't diagnosed with a disability but has a lot of similar stuff going on. In fact, in some cases I can feel a stronger sense of attachment and community (in terms of what we are like, and what our disability is practically like) with a person who belongs to one of the other groups than with a person who belongs to the group that's supposedly my group. It's true that all the people I'm close to online have autism, but that isn't the case with the disabled or disabled-ish people I'm friends with in real life.

I like to say bad brains because I think it is kind of a way of being more practical by addressing exactly what is going on. My early life doesn't really matter right now, what matters is what I have to manage and what I'm experiencing day to day, which is bad brains. It also matters what I have in common with other people because if we're dealing with similar things we can help each other. That "what" is bad brains, not autism.

17 August, 2011

I still feel totally sad about the [location redacted] drama yesterday. The Internet can kill you with the way it lets you interact with people you like theoretically from a distance.

I used to read [] and [name redacted, let's call him Ted] was one of those people whose blog you read and imagine that they'd probably be your kind of person if you ever met or talked to them. Now we've had an exchange where he told me there's this big difference between Zoe, me, Julia, etc., and people who "can't self-advocate" and if that statement offends me it's my problem not his.

The more I talk, listen, read, and write about anti-ableism, the more certain arguments and statements become painful for me to even hear. Which is kind of a huge problem and makes me think I will have to bow out of here sooner or later. But for the time being, I'll just say that the belief in a concrete division between people who can and can't self-advocate is really frustrating to me.

First it's frustrating because labeling some people as unable to self-advocate takes away their voice. Ari Ne'eman once wrote something about the difference between action and behavior. Actions are things that people choose to do for a reason and, if a person's not able to use words describe their feelings and needs and desires, the things they do are a pretty good window into what their feelings and needs and desires might be, and therefore are a form of self-advocacy. When all of a disabled person's actions are categorized as "behavior" that needs to be changed to look a certain way--instead of as communication--this is the act of taking away someone's voice.

But Amanda Baggs addressed this much more clearly in The Meaning of Self-Advocacy, maybe because unlike Ari and me she is someone who has been labeled unable to self-advocate, and isn't looking at this from the outside.

I really want to address the other category, the one I'm supposed to belong to: people who can self-advocate. Zoe was told she belonged to this group due to writing a blog post. I was told I belonged to the group due to writing a comment on that blog post.

Now, I'm sorry if I'm underestimating the power of the Internet, but I don't think writing a comment on a blog post is especially impressive, and by some people's standards it would not be self-advocacy. Arguably, neither is having a blog. I wrote something for ASAN one time but otherwise I have never been involved with any self-advocacy or disability rights organizations; I've never been to a disability rights protest or a self-advocacy conference, summit, etc.; I've never spoken formally to a group about being disabled, or about anti-ableism; I've rarely even tried to talk to people, informally, about anti-ableism; I've never written a letter to a newspaper or made a phone call in support of disability rights.

Some of these things--like speaking formally about anti-ableism--are things I might be able to do, but just haven't gotten an opportunity or motivation to do. Other things, like writing letters to newspapers and going to protests, are things I very much can't do. In fact I remember a time when I got really upset and felt like a failure for wanting to support anti-ableism when I wasn't able to write a letter to the newspaper.

Don't worry guys, my impairments will never stop emerging! In addition to this more obviously political stuff, there are some more personal acts that are often described as "self-advocacy." For a lot of my life my parents (and the very occasional support staff I have grudgingly been allowed) have been trying to get me to do these things:

*Successfully use disability services when I was in college*Ask for help from teachers/professors when I was in school*Ask for help from boss/coworkers at a job*Explain my disability, when it is relevant to help I need*Ask people to write letters of reference for me, or be a phone reference*Call places to follow up after I've applied for a job*Make my own doctor's appointments

All of these things I either can't do at all, or find so hard to do that they almost never happen. Why yes, I am looking for a job right now and I'm scared as hell, and if I don't get one or end up getting the only job I was able to drag myself through the application process for and am stuck with it no matter what it is...like, I really won't feel better when I think about writing a two- or three-sentence comment on Zoe's blog?

Ultimately, I guess I will feel better when I think about writing this blog (the entire blog, not this particular post) because I know that it's helped some other disabled people think about disability and ableism. And ultimately I guess I do consider myself a self-advocate and this blog a form of self-advocacy, but I don't think it fits into conventional standards of either political or personal self-advocacy. I think it pretty much is in there with screaming and smashing, because it is a last resort, and because most non-disabled people seem to think it is a waste of time.

So I guess what I mean to say is, I don't really think I am a self-advocate in a way that someone else isn't. And it's probably clear why I find it painful to be told I am, when there is so much I can't say for myself.

16 August, 2011

My first writing about disability was about an ABA school that I interned at when I was 20, which was a very ableist and passing-obsessed environment. Being in that environment I was forced to confront things I'd tried not to think about.

I remember when I first started writing about this kind of thing I was very careful to say that I wasn't anti-ABA and thought ABA could be really helpful and useful. I've kind of dropped that whole thing, not because I'm against behaviorism--I arguably am a behaviorist--but because I guess I am against any school or therapist who identifies as "ABA." ABA is technically a way of teaching, not what is taught, but it has historically been associated with physical punishment and it still is very much associated with passing. So I tend to make certain assumptions about anyone who identifies with the label ABA without trying to apologize for or justify it.

Recently my dad was trying to convince me to work at a very old, famous ABA program, because of the benefits. When I pointed out that the person the program is named after used to give electric shocks to children to stop them from flapping their hands, my dad told me that he had researched this on the Internet and "they don't do that anymore." But this isn't enough for me.

It's not enough for professionals to refrain from the most obviously abusive practices, especially if they identify themselves with the doctor who introduced those practices. If you're going to work in an area that has that kind of history, you have to address that history. It's not enough to just stop hitting kids because you shouldn't hit kids--you have to think about why people like you were hitting kids in the first place, and how they got to a point where they decided it was okay, and how you might end up getting to a similar point.

09 August, 2011

So I'm back from working at camp and I have been feeling more and more that I don't want to be staff for people with DDs--I was going to say more on this later, but why don't I just tell you about it now. I wouldn't pass up an opportunity to work with people with DDs if it fell into my lap (I wouldn't pass up any job if it fell into my lap obviously), and might volunteer if I can find any easy/convenient way to do it. I want to return to camp every summer for as long as I can, because there are some campers I consider friends and can't have a long-distance friendship with because they can't write/read/talk on the phone. But I don't particularly aspire to have another job with that population. What I'm thinking right now is that I'd like to do personal care stuff in a hospital, which might include working for some people with DDs, but wouldn't primarily be defined that way. It is the definition that really gets to me.

I became seriously interested in working with people with DDs when I was about 19 (I'm 22 now). At that point I didn't think of myself as disabled or really even as being on the autism spectrum, even though I judged myself much more in the frame of my not-really-autism than I do now. I just knew that I felt safer and happier with people who had DDs, regretted the lack of opportunity to be around them when I was growing up, and couldn't handle the stress of working with and for "normal" people.

Ultimately it was a way of cheating. When I went into spaces where I was in a staff role, I was categorized as non-disabled by other staff; I could do or say pretty much anything, sometimes including telling people I had a disability and what it was, and it would never stick long enough for me to be categorized as disabled. People would forget or ignore anything that muddled the division between disabled people (campers/students/consumers) and non-disabled people (staff). People I told about my jobs would always tell me how "special" and "patient" it was for me to work with people who had DDs. So I got to be someone who was officially, unquestionably non-disabled, who was even an especially nice non-disabled person, while being around disabled people which was what I really needed.

I think through the positive presence both of people I've met through anti-ableism online and people I've been staff for, I've become someone who can no longer be so disconnected from the fact that I'm disabled. When I'm assumed to be non-disabled by other staff I feel erased; not just by definition, but also because anti-ableism and disabled friends are a big part of my life so it can be difficult to even talk to people when that isn't recognized. When other staff say ableist things, I take it personally, and the gulf between me and the staff people I actually like suddenly becomes enormous because they don't--even if they see a problem with it, it isn't about people like them.

Now that I'm no longer hiding from myself I find this terrifying and depressing to be around.

There was an in-between period where I felt guilty about staff work--putting myself in a situation that was more comfortable for me as a disabled person but also making it much easier for myself to access passing privilege. It felt like I was doing it at the expense of the "clients" or officially disabled people or whatever you want to call them, since I was trying to get the benefit of knowing them while also keeping very clear separation from them. But at some point this conflict disappeared. I don't feel separate from them, or want to be.

PICTURE NOTE: as a lot of us probably know, Photobucket has recently stopped allowing people to hotlink images. For the first few years I was using this blog, I used Photobucket to host most of the images, so now they will not be visible! Until Photobucket goes under, as I imagine it will, you can at least see the images by opening them in a new tab.